Wow! Thank you for all your replies
Leo is now 3 and a half. His head tilt has changed slightly. He now seems to be able to control his Nystagmus a little better for close up work, so he can look straight ahead and only uses the head tilt for distance. Leo now also has a quite severe prescription for astigmatism and has glasses. Due to Leo's head tilt, he can only wear his glasses for close up work.
Despite Leo's vision, he is a master at drawing!
He spends all of his time drawing really intricate designs. Very impressive I think, considering. He has also always loved climbing. He will climb anything and everything and his greatest joy is to jump off very high things
His Nystagmus hasn't seemed to affect that side of him at all. He did take a little longer to get walking than my older daughter, but that could have been due to his size. He's a big boy and was a very chubby baby! He also took a lot longer to get confident in the water, I don't know if that was Nystagmus related. If he's not sure of something, he is very apprehensive. He now absolutely loves swimming. He won't go in without his goggles and is always under the water
A week ago, we went to the hospital again for Leo's usual check up and we actually got to have a proper talk with Professor Gottlob. She said that because of Leo's head tilt and the fact that he needs glasses, they will look at operating early next year
I'm VERY nervous about the operation, mostly from a soppy mum's perspective. I am very thankful for all your responses, especially that from Ingmol, you have answered many of my questions
I wondered about the stitches and whether he'd still have his head tilt until he learned otherwise. I'm so glad to know about your head tilt problems, you have made me so much happier about the surgery and I know now that I'll be doing the right thing.
I am very grateful that Leo can have this corrective surgery and also before he gets too old and before he starts school.
I am busy writing a list of questions to take into hospital on my next visit.
I wonder how long the stitches stay in and are they the dissolving type?
I also wonder if your vision improves at all after the surgery - I suppose not.
I was told that there may be a lot of redness and that Leo may need more than one operation and that he may have a squint afterwards?!
One of my biggest fears is that both eyes don't work together after the operation.
Ingmol, did you have your operation in the UK? Leo will have his operation at the Leicester Royal Infirmary, where professor Gottlob is based. I wonder if she does the surgery herself? I'll see if I can find that video on YouTube.
Thanks again for all your responses
(mum of Leo 3 and half, Freya 5 and now also Harry 3 months)